We can't believe we are writing these words...
THE JANSENS ARE COMING HOME!!!!!!!!!
I have to write it again, The Jansens are coming home. TOMORROW!! or Wednesday.
Beck has decided its time to bust this joint and find his new digs at home. Saturday morning Beck's percentage of PO (what he eat by mouth, compared to his feeding tube) was 54%. Where it had been the past couple of days. There must have been a light switch that came on because at 9 pm he starting drinking his whole bottle. He continued to do it at each feeding throughout the night. He was doing so well that by Sunday, late afternoon, close to 24 hours of feeding on his own, they took out his feeding tube. By midnight last night, they switched him to ad lib( he can choose how much he eats and when he eats it) in hopes he would wake up and want to eat and maintain his weight. Throughout the night he decided that he wanted to eat just about every two hours and this morning has gained 50 grams. 8 pounds 4 ounces.
God sure answers prayers. He is totally being glorified through Beck and his story and we are so thankful for all of you in joining us! Last week we asked for prayer for breathing. Beck came off all oxygen a day after that and has stayed off. We are going home with no oxygen! We asked for eating. Obviously, he is rockin' it! Going home? Forget four weeks! they are kicking us out tomorrow! Rest. Well, lets be honest what parent of newborns feel rested in the first few years? haha God give immeasurable amounts of strength to us each day.
Today Beck has to sit in his car seat for 90 minutes and not have any events. If he does that? He gets all his monitors off. No heart rate monitor, respiratory rate monitor, NOTHING! and then...smooth sailing all the way home.
OAK HARBOR we know you already had a parade this weekend, but you think you could have another for us tomorrow?! hahaha
We are so excited to introduce you all to Beckland Thomas. Beyond ready to be a family of four at home! Because of Beck's rough start his respiratory system is still very frail. He can catch the smallest bug and it could throw him under a bus from catching it. So, we ask, to PLEASE be responsible in evaluating your health before you come over to see him. We will hopefully be home forever so the possibility of you being able to see him is pretty high. If you feel a little bum come over a different day. Also, because he is a preemie, there are a few general rules to when you do come over. He is very sensitive to stimulation. He loves SLOWNESS, QUIETNESS AND DARKNESS. He will let you know when he is being over stimulated when he hiccups, yawns, arches backwards, splayed hands(a "talk to the hand" movement), straightened arms, or no eye contact. We can always help you out too if you have any questions.
We are so excited! So excited to be sleep deprived, a family of four, to sleep in our own beds for the first time in 4 months, to foster Beckland's heart, to teach him about the One who gives life and loves abundantly, to watch Mason grow into a big brother, and so excited to give God all the glory He deserves. This is Amy's FAVORITE Bible verse of all times. It is so appropriate to proclaim and sing it at the top of our lungs;
Praise be to you, Lord,
the God of our father Israel,
from everlasting to everlasting.
11 Yours, Lord, is the greatness and the power
and the glory and the majesty and the splendor,
for everything in heaven and earth is yours.
Yours, Lord, is the kingdom;
you are exalted as head over all.
12 Wealth and honor come from you;
you are the ruler of all things.
In your hands are strength and power
to exalt and give strength to all.
13 Now, our God, we give you thanks,
and praise your glorious name.
1 Chronicles 29:10-13
Can't wait to see you guys soon!
Jake,Aim, Mase and Beck
Monday, May 2, 2016
Wednesday, April 27, 2016
105
Today marks 105 days since UWMC became my home. I have been in this place for 15 weeks. The equivalent to a semester of college, just about 1/3 of the year. So far the year 2016 has been lived out in either room 609 in the antepartum wing or room 80 in the NICU. The past seven weeks being in the later room. WE ARE TIRED!!
BUT...
I think there is an end of the tunnel shinning ever so dimly our way. I can start to see the illumination of light. About an hour ago our nurse came and hung up a discharge checklist on our wall! Granted, we have two things checked off so far, we now know what needs to be done in order to go home. Initially we were told that the three items to check off were basically, be four pounds(check! we hit 8 today), breathe on their own(our main struggle), and feed on their own(working on it). Now we have an actual list of things to check off and it is much longer and bigger than just three items. Things like be able to give a bath, car seat safety class, know signs of chocking, know signs of under oxygenation, be able to give medication( we only have vitamins, check), etc. I can start crossing off a lot of these small boxes in the next couple weeks!
In terms of the three big checks(weight, breathing and eating) we have one out of the way and are working on the last two. Beck has started taking from a bottle. He needs to be able to take a full feeding(just over two ounces, 63cc) from a bottle in under 45 minutes every three hours for 48 hours before we can check off that box. A tall order for such a small boy, but he is a champ and working hard at it. We have worked off of all fortified milk and added proteins. So we are only on straight breastmilk and growing like a weed. In the past 48 hours he has taken 5 full feedings of his 16 offered. So we have a ways to go, but are working hard. I am still pumping all the milk for him. We have a deep freezer at home full of extra milk I have pumped, so we should be set to go!
OK, BREATHING- this is where Beck is struggling the most. He has been diagnosed with BPD( Broncho Pulmonary Dysplasia). He is still needing oxygen after what is considered a full term baby ( 37 weeks). We are trying to work him off of his nasal cannula, but it has been a struggle. We are currently still on low flow at 1 liter with 22-23% oxygen. We breathe 21% oxygen. SO WE ARE SOOO CLOSE. but he seems to really need those last little wiff's of O's to keep his 02 in the 90's. We are working down again to hopefully try to come off of them some time next week. We will see how he does. If he gets his feeding down pat and is ready to go home in terms of feeding but still needs some oxygen then we will most likely go home with him being on oxygen. We feel confident in understand and working his oxygen, but would love to leave the oxygen here at this place and start fresh new at home with no needed assistance. We will see.
So obviously our prayer requests are:
*breathing
*eating
*going home
*and rest and healing through it all
We serve a GREAT KING and Beck's whole story/life is a living testament of a risen King, Christ Jesus, who is most deserving of all the glory!
Hopefully we will have more exciting news to post soon (hopefully in four weeks we will have a GRAND announcement)!
J&A
Thursday, April 14, 2016
Through the Muck and Mire there is Mercy and More
These waters we are treading in are deep. Almost head deep. May I even say it is costly? The condition of our minds and hearts consume and demand all our attention and efforts.
Beck was diagnosed with a Staff Infection. The GBS strand. It, Praise Jesus, did not travel and get to his spinal fluid. God knows what we need before we even need it. Last Wednesday Beck started acting abnormal. We struggled to keep him breathing while maintaining his heart rate and O2 sats. We struggled for about 14 hours before on Thursday morning, our primary nurse came in! Mikaela, our primary(the one nurse that has laid claim to Beck, every time she is here, she is with Beck all day) came in early Thursday morning wondering what was happening. It only took her a few minutes before calling all docs in to start investigating what was happening. Because of her, they found the infection in his blood and urine but found it VERY early. Babies who get this usually get VERY sick. It takes a while to present itself and travels too fast in the body. Praise the Lord, Mikaela was here and fought for him! We now are stable again and are on day 6 of 10 for antibiotics. He still is on 1 liter of low flow with 23% oxygen. Last Thursday we went all the way back to high flow 3 liters with 64% oxygen at times. But, we are on the mend, thanks be to God for Mikaela's diligent work and for knowing Beck so well.
Jake and I have had to do some hard soul work lately. If you were to see us, I think you could tell our souls lie in the deep, dark waters. We are still plagued with memories from Hailey. It is a struggle for us to think that Beck will come home with us some day. We probably won't believe it until we walk through the front door of our home. Every new baby that comes in, Jake and I start the process of worrying for them. The babies that don't make it, send us into a spiral of memories that cut deep. We walk around in a fog those days. The fog that was Hailey is okay to have, but it is clouding our vision and walk with Beckland. We aren't suggesting that we need to get rid of the memory of Hailey, but we found that we needed to start some serious soul work.
A friend wrote us an email(I wish I could just copy and paste the whole thing on here, because it is packed full of God's mercy, grace, truth and abounding love) that helped in opening our wounded souls. I have had such a hard time praying this time around. We know that God is sovereign, and we still fully believe it. If God wants Beck to be with us, it will be. If God wants Beck to be with Hailey, it will be. We are oddly at so much peace in knowing this. However, we also know that God wants to know the desires of our hearts. And that is where I have a hard time. I don't want to pray the desires of my heart when a huge plead went seemingly went unanswered last year with Hailey. I would rather sit in the head knowledge of knowing "God is God and I am not" than opening Pandora's box of wants and desires before our Lord. Jake has a harder time giving fully his worry to our Lord. He feels like there is so little that he already can do for Beck, so worry is the one thing he can do. Couple that with how much we know about this situation because of what happened to Hailey and he is found in a soul crushing environment.
We know it is ok to sit in this state. It is okay to feel all that we are feeling. It is okay to not want to talk with God. It is okay to yearn for Hailey in our arms every time we pick up Beckland. It is okay to feel the weight of all of this and want to cry "My God, My God...why have you forsaken me". But just as Jesus cried that on the cross as he hung there for ME, He died and then OVERCAME death. Let me say that again, HE OVERCAME. We just celebrated with all authority and joy on Easter, Resurrection Sunday, His conquering over death. All through Revelations we see how, because Christ overcame we will as well. Overcome, He has; overcome, we will is a great article about it. So, although we know it is okay to sit in this muck and mire we find that wading through and working towards Christ is far more rewarding. Even if it one tiny sanctifying step a day. His mercies greet us, new every dawn break! He is willing to fight for us, build us up, supply strength, give ample amounts of grace and hold us through if we continue to acknowledge Him as our Lord and Savior and seek first and foremost His glory. Let me repeat that part again because it is part of the real hard soul work; we need to seek first and foremost His glory. Not ours. We seek his glory instead of ours in being parents. We seek His plan instead of ours in what we think our family should look like. We seek His timing instead of ours for when things should happen. We seek His heart instead of ours.
This friend, in the email, pointed us to Hebrews 13:15. It says "Therefore, let us offer through Jesus a continual sacrifice of praise to God, proclaiming our allegiance to his name". She wrote :
"I have often pondered the meaning of Hebrews 13:15 which talks about offering a sacrifice of praise. Using sacrifice and praise together seems like an odd pairing. Praise is positive thanks, right? It seems to me that the words "sacrifice of praise" was referring to praise of a different kind. One of the things the Lord shared with me one day is that there is easy praise, the kind that just falls from our lips like thankfulness for a sunny day. And then there is the kind which is a sacrifice, it is costly to offer this kind of praise. Sacrificial praise (in my understanding) goes against my ability to make sense of things and requires that I give thanks for the places of pain, hurt, confusion, and suffering. This is certainly not my disposition naturally... It is very costly to thank God for the pain and suffering - a true sacrifice of praise which will allow me to mostly be at rest with those things which are senseless, and with an inability to pray. "
Jake and I have entered the costly work of offering a sacrificial praise to God for our pain, hurt, confusion and suffering. We are no where being close to saying we are fully there and able to. But we are on the journey of starting to do that because Jesus became the full sacrifice for us. Many people say "I will ask God ____(fill in the blank) when I get to heaven". Although Jake and I have so many questions we wish to ask, we find ourselves asking them now. Because frankly, when we get to heaven I don't think those questions will matter anymore. We will be face to face with our creator and will want nothing more to do than to fall on our knees, worship and praise Him. A full sacrificial act of praise.
For now, we rest in this "Because of our faith, Christ has brought us into this place of undeserved privilege where we now stand, and we confidently and joyfully look forward to sharing God's glory. We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love. When we were utterly helpless, Christ came at just the right time and died for us sinners...So now we can rejoice in our wonderful new relationship with God because our Lord Jesus Christ has made us friends of God."
Beck was diagnosed with a Staff Infection. The GBS strand. It, Praise Jesus, did not travel and get to his spinal fluid. God knows what we need before we even need it. Last Wednesday Beck started acting abnormal. We struggled to keep him breathing while maintaining his heart rate and O2 sats. We struggled for about 14 hours before on Thursday morning, our primary nurse came in! Mikaela, our primary(the one nurse that has laid claim to Beck, every time she is here, she is with Beck all day) came in early Thursday morning wondering what was happening. It only took her a few minutes before calling all docs in to start investigating what was happening. Because of her, they found the infection in his blood and urine but found it VERY early. Babies who get this usually get VERY sick. It takes a while to present itself and travels too fast in the body. Praise the Lord, Mikaela was here and fought for him! We now are stable again and are on day 6 of 10 for antibiotics. He still is on 1 liter of low flow with 23% oxygen. Last Thursday we went all the way back to high flow 3 liters with 64% oxygen at times. But, we are on the mend, thanks be to God for Mikaela's diligent work and for knowing Beck so well.
Jake and I have had to do some hard soul work lately. If you were to see us, I think you could tell our souls lie in the deep, dark waters. We are still plagued with memories from Hailey. It is a struggle for us to think that Beck will come home with us some day. We probably won't believe it until we walk through the front door of our home. Every new baby that comes in, Jake and I start the process of worrying for them. The babies that don't make it, send us into a spiral of memories that cut deep. We walk around in a fog those days. The fog that was Hailey is okay to have, but it is clouding our vision and walk with Beckland. We aren't suggesting that we need to get rid of the memory of Hailey, but we found that we needed to start some serious soul work.
A friend wrote us an email(I wish I could just copy and paste the whole thing on here, because it is packed full of God's mercy, grace, truth and abounding love) that helped in opening our wounded souls. I have had such a hard time praying this time around. We know that God is sovereign, and we still fully believe it. If God wants Beck to be with us, it will be. If God wants Beck to be with Hailey, it will be. We are oddly at so much peace in knowing this. However, we also know that God wants to know the desires of our hearts. And that is where I have a hard time. I don't want to pray the desires of my heart when a huge plead went seemingly went unanswered last year with Hailey. I would rather sit in the head knowledge of knowing "God is God and I am not" than opening Pandora's box of wants and desires before our Lord. Jake has a harder time giving fully his worry to our Lord. He feels like there is so little that he already can do for Beck, so worry is the one thing he can do. Couple that with how much we know about this situation because of what happened to Hailey and he is found in a soul crushing environment.
We know it is ok to sit in this state. It is okay to feel all that we are feeling. It is okay to not want to talk with God. It is okay to yearn for Hailey in our arms every time we pick up Beckland. It is okay to feel the weight of all of this and want to cry "My God, My God...why have you forsaken me". But just as Jesus cried that on the cross as he hung there for ME, He died and then OVERCAME death. Let me say that again, HE OVERCAME. We just celebrated with all authority and joy on Easter, Resurrection Sunday, His conquering over death. All through Revelations we see how, because Christ overcame we will as well. Overcome, He has; overcome, we will is a great article about it. So, although we know it is okay to sit in this muck and mire we find that wading through and working towards Christ is far more rewarding. Even if it one tiny sanctifying step a day. His mercies greet us, new every dawn break! He is willing to fight for us, build us up, supply strength, give ample amounts of grace and hold us through if we continue to acknowledge Him as our Lord and Savior and seek first and foremost His glory. Let me repeat that part again because it is part of the real hard soul work; we need to seek first and foremost His glory. Not ours. We seek his glory instead of ours in being parents. We seek His plan instead of ours in what we think our family should look like. We seek His timing instead of ours for when things should happen. We seek His heart instead of ours.
This friend, in the email, pointed us to Hebrews 13:15. It says "Therefore, let us offer through Jesus a continual sacrifice of praise to God, proclaiming our allegiance to his name". She wrote :
"I have often pondered the meaning of Hebrews 13:15 which talks about offering a sacrifice of praise. Using sacrifice and praise together seems like an odd pairing. Praise is positive thanks, right? It seems to me that the words "sacrifice of praise" was referring to praise of a different kind. One of the things the Lord shared with me one day is that there is easy praise, the kind that just falls from our lips like thankfulness for a sunny day. And then there is the kind which is a sacrifice, it is costly to offer this kind of praise. Sacrificial praise (in my understanding) goes against my ability to make sense of things and requires that I give thanks for the places of pain, hurt, confusion, and suffering. This is certainly not my disposition naturally... It is very costly to thank God for the pain and suffering - a true sacrifice of praise which will allow me to mostly be at rest with those things which are senseless, and with an inability to pray. "
Jake and I have entered the costly work of offering a sacrificial praise to God for our pain, hurt, confusion and suffering. We are no where being close to saying we are fully there and able to. But we are on the journey of starting to do that because Jesus became the full sacrifice for us. Many people say "I will ask God ____(fill in the blank) when I get to heaven". Although Jake and I have so many questions we wish to ask, we find ourselves asking them now. Because frankly, when we get to heaven I don't think those questions will matter anymore. We will be face to face with our creator and will want nothing more to do than to fall on our knees, worship and praise Him. A full sacrificial act of praise.
For now, we rest in this "Because of our faith, Christ has brought us into this place of undeserved privilege where we now stand, and we confidently and joyfully look forward to sharing God's glory. We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love. When we were utterly helpless, Christ came at just the right time and died for us sinners...So now we can rejoice in our wonderful new relationship with God because our Lord Jesus Christ has made us friends of God."
Thursday, April 7, 2016
What's Our Story
From Jake
I've taken a lot of time to decide whether to write a post or not. I haven't felt a strong urge to express to the world how I feel until now. Don't get too excited because I'm probably just going to ramble on and on.
It's been about 27 days since Beck entered this world with a bang; and it took a monumental effort in the first couple of days to keep him with us. Even though he need a lot of intervention he greatly impressed the whole NICU team with his response to the treatment. This gave Amy and I so much comfort that our Lord was with Beck. One of the docs said "I can't believe how well he is doing...he's a different kid." All I could think to myself was, "I asked God not to hold back on miracles" because I knew we would need a whole basket full and God poured out his grace to Beck. And for the past few weeks all we focused on is "growing" Beck. Packing on the ounces (he's over 6 pounds now) to where he now doesn't fit in preemie clothes anymore. But, the docs warned us that this journey will be a roller coaster.
As I write this blog Beck is getting a spinal tap (drawing spinal fluid) because he has been struggling for several days with maintaining his vitals. They believe Beck may have an infection which has caused him to periodically stop breathing(apnea). These event are extremely scary. You get to watch your kid's vitals dump and all you want to do is hold him but you can't touch him because the docs want to see if he can "self" recover. After about 7 seconds if he's hasn't started breathing you have to stimulate him by rubbing his back or feet to remind him to breath. I think this event is why I have finally decided to write. The uncertainty that we still feel about bringing Beck home is still real.
Amy and I had the chance to go out to dinner the other night because my sister was willing to babysit Beck for us(we didn't have to try very hard:). We were so excited to get to go on a date and escape the NICU for a couple hours. However, the NICU followed us on our date and we spent the better part balling our eyes out as we let all our emotions flow. What I realized is that I'm struggling to separate what happened with my daughter Hailey from my current situation with Beck. I feel "on guard" all the time because if I let my guard down then I'm gonna loose Beck. I have felt unable to fully put God in control of Beck. I feel that somehow by me worrying I can extend Beck's life. I so want to be his dad and make everything better fully knowing my Heavenly Father is far more capable. "Can any one of you by worrying add a single hour to your life?"Matthew 6:27 There is so much more in the rest of this chapter but this verse helps to calm the heart. I keep telling myself "let go and give it to the one that can bare it." This feels impossible! If I let my guard down I will lose Beck. Horrible feeling.
I don't have a fancy way of summing up this blog or a feel good ending to let you all know I'm ok or in a good place. I want so badly to bring my son home and am clouded by that desire. However, I will give you some good news, Beck tolerated the spinal tap really well and now they will start antibiotics to try to stay ahead of a possible infection. Pray for more miracles.
I've taken a lot of time to decide whether to write a post or not. I haven't felt a strong urge to express to the world how I feel until now. Don't get too excited because I'm probably just going to ramble on and on.
It's been about 27 days since Beck entered this world with a bang; and it took a monumental effort in the first couple of days to keep him with us. Even though he need a lot of intervention he greatly impressed the whole NICU team with his response to the treatment. This gave Amy and I so much comfort that our Lord was with Beck. One of the docs said "I can't believe how well he is doing...he's a different kid." All I could think to myself was, "I asked God not to hold back on miracles" because I knew we would need a whole basket full and God poured out his grace to Beck. And for the past few weeks all we focused on is "growing" Beck. Packing on the ounces (he's over 6 pounds now) to where he now doesn't fit in preemie clothes anymore. But, the docs warned us that this journey will be a roller coaster.
As I write this blog Beck is getting a spinal tap (drawing spinal fluid) because he has been struggling for several days with maintaining his vitals. They believe Beck may have an infection which has caused him to periodically stop breathing(apnea). These event are extremely scary. You get to watch your kid's vitals dump and all you want to do is hold him but you can't touch him because the docs want to see if he can "self" recover. After about 7 seconds if he's hasn't started breathing you have to stimulate him by rubbing his back or feet to remind him to breath. I think this event is why I have finally decided to write. The uncertainty that we still feel about bringing Beck home is still real.
Amy and I had the chance to go out to dinner the other night because my sister was willing to babysit Beck for us(we didn't have to try very hard:). We were so excited to get to go on a date and escape the NICU for a couple hours. However, the NICU followed us on our date and we spent the better part balling our eyes out as we let all our emotions flow. What I realized is that I'm struggling to separate what happened with my daughter Hailey from my current situation with Beck. I feel "on guard" all the time because if I let my guard down then I'm gonna loose Beck. I have felt unable to fully put God in control of Beck. I feel that somehow by me worrying I can extend Beck's life. I so want to be his dad and make everything better fully knowing my Heavenly Father is far more capable. "Can any one of you by worrying add a single hour to your life?"Matthew 6:27 There is so much more in the rest of this chapter but this verse helps to calm the heart. I keep telling myself "let go and give it to the one that can bare it." This feels impossible! If I let my guard down I will lose Beck. Horrible feeling.
I don't have a fancy way of summing up this blog or a feel good ending to let you all know I'm ok or in a good place. I want so badly to bring my son home and am clouded by that desire. However, I will give you some good news, Beck tolerated the spinal tap really well and now they will start antibiotics to try to stay ahead of a possible infection. Pray for more miracles.
Friday, April 1, 2016
Update 34 Weeks
Today was the day my mom was supposed to come so that she could be here for my scheduled c-section on Sunday, the day Beckland and I turned 34 weeks!
Beck had other ideas of when he should enter this world and we were happy to meet him earlier than expected. Here are some updates...
* Beckland came off all assistance in breathing last Thursday. He lasted 5 days before needing more assistance. He is back on a nasal cannula at low flow with oxygen around 24%. This is totally normal for a baby that had as rough of a start as he did. He is still learning how to breathe and make everything work. He is still young and growing.
* He is now 5 pounds 5 ounces. He gains around 40-50 grams a day now! BIG boy growing :)
* We have started the grueling journey of breastfeeding. Beck still is learning how to breathe, suck and swallow all at the same time. Some times he forgets to do some of those things resulting in not breathing or choking. SCARY stuff. Because he couldn't eat for the first week of his life and because of how small he is, I make a lot more milk than he needs. So we are trying to pump and breastfeed all in one sitting. The whole process takes a little over an hour to do. But, we have to do this every three hours. It makes for LONG days and nights. Trying to be patient with each other and learn together how to do this.
*Because Beck is starting to learn how to feed, I, Amy, am here permanently now. Which also puts a new exhaustion on this process. Before(really, I have only done it twice) I would escape home for a night or two of rest on the weekends while Jake was here with Beck. I already hate this hospital and now I have to voluntarily be here. It's harder than I thought.
*Mason is having the time of his life living with Papa and Gogo(my parents) for a few weeks. He plays with marbles, perfecting his balance bike with the neighbor boys, going to many different parks, easter egg hunts, and pools! Have I mentioned how wonderful our families have been?!! It wouldn't be possible to do what we are doing if we didn't have our families.
That's it for now! There is no talk of future plans or what the future looks like for us. We take it day by day. We have daily meetings with doctors to talk about plans and goals for the day. It really is up to Beckland. He steers the ship with how much progress he makes and where we go! I also wanted to let you all in on a choice that Jake and I had made way back to right before Mason was born. We had and still choose to not post any pictures of our kiddos on social media or the internet. We do it out of safety and we like the idea of letting them, when they are adults, choose to what extent they want their lives played out on social media and the internet to be. They would get to choose what pictures they want out there. So, because of that choice we won't be posting any pictures of Beckland on here. If you do want a picture of him, or Mason, feel free to contact Jake or I and we would LOVE to show you our beautiful boys( people say Beck looks like Mason but I don't see it yet):)
From room 80,
Amy
Beck had other ideas of when he should enter this world and we were happy to meet him earlier than expected. Here are some updates...
* Beckland came off all assistance in breathing last Thursday. He lasted 5 days before needing more assistance. He is back on a nasal cannula at low flow with oxygen around 24%. This is totally normal for a baby that had as rough of a start as he did. He is still learning how to breathe and make everything work. He is still young and growing.
* He is now 5 pounds 5 ounces. He gains around 40-50 grams a day now! BIG boy growing :)
* We have started the grueling journey of breastfeeding. Beck still is learning how to breathe, suck and swallow all at the same time. Some times he forgets to do some of those things resulting in not breathing or choking. SCARY stuff. Because he couldn't eat for the first week of his life and because of how small he is, I make a lot more milk than he needs. So we are trying to pump and breastfeed all in one sitting. The whole process takes a little over an hour to do. But, we have to do this every three hours. It makes for LONG days and nights. Trying to be patient with each other and learn together how to do this.
*Because Beck is starting to learn how to feed, I, Amy, am here permanently now. Which also puts a new exhaustion on this process. Before(really, I have only done it twice) I would escape home for a night or two of rest on the weekends while Jake was here with Beck. I already hate this hospital and now I have to voluntarily be here. It's harder than I thought.
*Mason is having the time of his life living with Papa and Gogo(my parents) for a few weeks. He plays with marbles, perfecting his balance bike with the neighbor boys, going to many different parks, easter egg hunts, and pools! Have I mentioned how wonderful our families have been?!! It wouldn't be possible to do what we are doing if we didn't have our families.
That's it for now! There is no talk of future plans or what the future looks like for us. We take it day by day. We have daily meetings with doctors to talk about plans and goals for the day. It really is up to Beckland. He steers the ship with how much progress he makes and where we go! I also wanted to let you all in on a choice that Jake and I had made way back to right before Mason was born. We had and still choose to not post any pictures of our kiddos on social media or the internet. We do it out of safety and we like the idea of letting them, when they are adults, choose to what extent they want their lives played out on social media and the internet to be. They would get to choose what pictures they want out there. So, because of that choice we won't be posting any pictures of Beckland on here. If you do want a picture of him, or Mason, feel free to contact Jake or I and we would LOVE to show you our beautiful boys( people say Beck looks like Mason but I don't see it yet):)
From room 80,
Amy
Tuesday, March 22, 2016
How Great Thou Art
When I was being rushed to the OR for delivery I was by myself. Jake and I left each other in room 609. He had to get dressed and a nurse would come get him when they were ready for him. They told him, it would happen rather quickly so be ready sooner than later. We were reunited, what seemed like an eternity, later when just a short 30 seconds later Beckland entered this world. As planned, Jake left quickly with Beck down to NICU and left me on the OR table again by myself. Jake's sister, Jess, had also been prepped and ready to come in as soon as Jake left so someone would be with me while Jake stayed with Beck. In actual time, it probably was around two or three minutes until Jess got to my hand that was looking for a squeeze. In Amy time, it was waaay too long. I was lonely, overly scared of C-Sections( especially when I deliver so quickly and easily vaginally), and in desperate need of comfort. When all of a sudden I started singing, OUT LOUD! haha Hymns and scripture have a funny way of bubbling out of you when you don't know what else to say or do. I'm not sure who all was listening and frankly, I didn't care. "O Lord my God, when I in awesome wonder. Consider all the worlds thy hands have made. I see the stars, I hear the rolling thunder. Thy power throughout the universe displayed. Then sings my soul( I was really belting it here) My Savior God, to Thee. How great thou art, how great thou art. Then sings my soul, my Savior God, to Thee, how great thou art, how great thou art! " and then Jess came in :)
In the past 13 days that song has sprung into my head numerous times. I have sat down to write an update blog two or three times now and just can't seem to find the right flow or theme. So, I am going to do some bullet points of updates and then leave you with a link to listen to this hymn.
*Beck weighs 4lb and 8 oz. He lost A LOT of weight after coming out due to not being able to eat. Now that other organs are working properly he can start having my milk and added calories through a fortified milk they add to my milk. He has gained weight everyday for the past week and now has finally surpassed his birth weight.
*He is still doing great breathing on just his nasal cannula. He still is on high flow of 2 liters per minute with hopes of going down to 1 tomorrow. This is the most impressive stat yet! He is breathing room air temp and pressure and will get to come out of his isolate tomorrow if he continues to do well today.
* At midnight last night his last port through his belly button came out. He is now port free. No IV's anywhere. Let's pray it stays that way! Because that UVC came out, he can have a bath and we can now dress him!!!! That is one of two big milestones today. If he can regulate his body temperature with clothes on, then the isolate comes off!
*He is getting 35 mL of breast milk every three hours. I have been able to pump and provide all that he needs in that area. Because he is now breathing at 2 liters, we can put him to a dry breast (after I pump) to start teaching him how to feed from me. We are praying that he can be exclusively breast fed. From the doctor's rounds this morning, it seems like practicing at a dry breast will get to happen today!! This is the other big milestone.
* I am starting to feel a little stronger every day. The more I can rest and sleep and better I get. I have a follow up today with my doctor and a follow up in two weeks with the neurologist about my TIA. I am staying with Beck during the week and then Jake comes on the weekends so I can get some rest.
* Beck's bilirubin is still a tad high at 8.2. We are hoping his SIX poops yesterday will help bring that number down. He will get his number tested again tomorrow morning. Praying he doesn't have to go back on the UV lights.
* He will turn 2 weeks old tomorrow and we are all awed (doctors and nurses included) at how well he is doing. Many are calling him the miracle baby. I would concur!! Praise the Lord!!
I think that is about it for updates on Beckland~ More to come later.
As we reflect this Holy week on the meaning of what happened, I want to leave you with a link to listen to this hymn so you too can not only sing God's praises along with us about Beck, but also sing his praises for Christ is Lord and He is risen and coming again!!
https://www.youtube.com/watch?v=dnvg0OtupuI
He is Risen,
Amy Joy
PS. Jake and I LOVE the last verse
When Christ shall come with shouts of acclamation,
And take me home, what joy shall fill my heart.
Then I shall bow, in humble adoration
And then proclaim, MY GOD HOW GREAT THOU ART!
We cannot wait to be before our Lord proclaiming this alongside our whole tribe that is already up there!
In the past 13 days that song has sprung into my head numerous times. I have sat down to write an update blog two or three times now and just can't seem to find the right flow or theme. So, I am going to do some bullet points of updates and then leave you with a link to listen to this hymn.
*Beck weighs 4lb and 8 oz. He lost A LOT of weight after coming out due to not being able to eat. Now that other organs are working properly he can start having my milk and added calories through a fortified milk they add to my milk. He has gained weight everyday for the past week and now has finally surpassed his birth weight.
*He is still doing great breathing on just his nasal cannula. He still is on high flow of 2 liters per minute with hopes of going down to 1 tomorrow. This is the most impressive stat yet! He is breathing room air temp and pressure and will get to come out of his isolate tomorrow if he continues to do well today.
* At midnight last night his last port through his belly button came out. He is now port free. No IV's anywhere. Let's pray it stays that way! Because that UVC came out, he can have a bath and we can now dress him!!!! That is one of two big milestones today. If he can regulate his body temperature with clothes on, then the isolate comes off!
*He is getting 35 mL of breast milk every three hours. I have been able to pump and provide all that he needs in that area. Because he is now breathing at 2 liters, we can put him to a dry breast (after I pump) to start teaching him how to feed from me. We are praying that he can be exclusively breast fed. From the doctor's rounds this morning, it seems like practicing at a dry breast will get to happen today!! This is the other big milestone.
* I am starting to feel a little stronger every day. The more I can rest and sleep and better I get. I have a follow up today with my doctor and a follow up in two weeks with the neurologist about my TIA. I am staying with Beck during the week and then Jake comes on the weekends so I can get some rest.
* Beck's bilirubin is still a tad high at 8.2. We are hoping his SIX poops yesterday will help bring that number down. He will get his number tested again tomorrow morning. Praying he doesn't have to go back on the UV lights.
* He will turn 2 weeks old tomorrow and we are all awed (doctors and nurses included) at how well he is doing. Many are calling him the miracle baby. I would concur!! Praise the Lord!!
I think that is about it for updates on Beckland~ More to come later.
As we reflect this Holy week on the meaning of what happened, I want to leave you with a link to listen to this hymn so you too can not only sing God's praises along with us about Beck, but also sing his praises for Christ is Lord and He is risen and coming again!!
https://www.youtube.com/watch?v=dnvg0OtupuI
He is Risen,
Amy Joy
PS. Jake and I LOVE the last verse
When Christ shall come with shouts of acclamation,
And take me home, what joy shall fill my heart.
Then I shall bow, in humble adoration
And then proclaim, MY GOD HOW GREAT THOU ART!
We cannot wait to be before our Lord proclaiming this alongside our whole tribe that is already up there!
Wednesday, March 16, 2016
Super Tuesday
Monday we had found out that we were not eligible
for any housing while Beck was in the NICU. Most of the day was spent
networking and praying. We were given many leads and are waiting back to hear
from one that is very promising! Praise the Lord! It is a church that is a few
blocks away from the hospital. They have housing for interns and have an open
space for us.
Here comes our super Tuesday:
Early wake up call at 5:00 am to find out I am
getting discharged!! After days of tests on, and two rounds of iron through an
IV, a final diagnosis of what happened to me was a TIA (Transient ischemic attack) I
had symptoms of a mini-stroke due to the lack of oxygenated blood
able to get to my brain due to the amount of blood I lost in surgery. After the
IV treatments, clear tests, and some nice drugs I am on the road to
recovery(although the road seem like a million marathon stacked on top
of each other)!
Shortly after discharge we found out
the day Beck had in front of him. The doctors had decided that it was time to
extubated him. Take out the tube that has been keeping him alive and
breathing?!!! WASN'T IT TOO EARLY FOR THAT?!! The doctors assured us that
they could put it right back in if need be. They had decided to take away the
JET machine( high frequency ventilator) and try to see if he could breathe on
other devises. They would start with a nasal cannula and go from there. The
time came for them to take it out. They needed help to hold his hands and feet
calm while they pulled it out. Any chance to touch Beckland made Jake and
I excited! With both excited and terrified tears in our eyes they pulled
the tube out and we got to hear our sweet boy cry and scream for the first
time! It was the sweetest symphony we had ever heard. They put the
nasal cannula in and he was having a hard time getting settled down. And
then these words were floating in the air : "LET'S PUT HIM ON MOM AND SEE
IF HE CALMS DOWN". Wait....what?!! say that again?!!! It was happening to
fast for it to sink in. They had me changed in a gown and sitting in a
chair before I could even let those words settle in. I was going to get to hold
him?! Within a couple minutes Beckland melted right into me and tears were
streaming down, like the flood gates were opened. I never thought I would ever
get to hold another live baby there on my chest again, yet, it was happening.
We couldn't stop crying...all while our emotions were trying to catch up
with the situation the nurse came in for some blood work to see how he was
handling breathing just on the nasal cannula. Within a couple
minutes of the blood draw a nurse came back in and said "we are all
flabber-gasted. We thought he would be alright off the tube, but no one was
expecting him to do this well. In fact, no one know how this is happening. His
blood works shows that he is doing better off all the machines than when he was
on them."
YOU GUYS.... do you still believe in miracles?
Jake and I got to be apart of one yesterday. It was the first day we sang
praises all day instead of pleads. We felt the blessing of being patient
for answers being thrown on us. After a couple hours of getting to hold
him, a nurse came in and said Beck was doing so well that if Jake
wanted a turn to hold him, he could. MORE TEARS! Let me tell you something.
Watching my husband hold his tiny precious son was a glimpse into how the Lord
holds us. We "melt" in Him and He, just as emotional as we were,
claims us as His own. Beck finished the long day with a new bed and
peaceful sleep.
Today, is just as big of a day for Beck. He just
got his chest tube out. There has been no leaking of air for the past three
days, so the doctors feel it is time to take it out and see what happens. We
pray for stability and for healing. We pray his lung hole closes and no more
air flows out, otherwise another surgery and another chest tube. Right after
they took it out he fell asleep. We pray for a healing rest right now.
Then, maybe some more lovin' and holdin'.
For now,
Amy
Saturday, March 12, 2016
He's A Fighter!
Our hearts are overfilled with the LOVE that we have for our son Beckland. Days old and yet so knitted into our family.
NICU stories and journeys are rough ones. We have already gotten a taste of that and are continuing to learn how to live with a little one in the NICU. Things change daily, hourly, even minute by minute. Some days are filled with hard news, trying times, and others are filled with nuggets of good news. The first day in the NICU was a rough one per usual. He was intubated and had hard times figuring out how to breathe and exchange gases with "22 week" lungs.
On his second day of life, he developed a hole in his lung. This hole was in the front of his lungs and the leaked air was filling right in front of his heart, so his blood pressure was failing. They did an emergency surgery on him to try and release the air. They had to transport him down to regular OR(for imaging purposes) and had to gather a whole team of doctors, some even from Seattle Children's, for this surgery. Jake was not allowed in, he waited outside for the two hour procedure. (most of the time was spent figuring out how to stabilize Beckland and position him for surgery). The tube was placed between his heart and breast bone. They successfully removed 75% of the air, which allow enough relief for his vitals to return to normal.
The tube is still in, and is used daily to remove the build up of air around his heart. He is still on nitric oxide to help him exchange gases, and he is still on oxygen. However, every little thing they do to try and help him, he response very well to. Every day is balanced with figuring how much of what he needs. Every day is some steps backwards, and many steps forward. He has to stay sedated for most of the time right now because he is too big for his lungs. He thinks he is a big boy already and moves too much for what his lungs can handle. We have a little fighter on our hands! Beck is also a little jaundice, so he is now catching rays under UV light for a couple days. Amy got to change his diaper a few nights ago, and today he started a feeding tube with Amy's milk! Praise the Lord he is responding well to it. Kangaroo care is able to start once his chest tube comes out.
Every sweet baby down there gets their own room. One of the nurses make signs for the baby's room. The other day Beckland's sign showed up! This is officially his room now:) let's hope he stays and fights there longer!!
Amy is having a rough time recovering from surgery. She lost just over a liter and a half of blood and is having a hard time replenishing it. She has fought already numerous obstacle and we are praying for more miracles to happen so she can join the rest of her family down in the NICU.
Thursday, March 10, 2016
Beckland Thomas Jansen
*Beckland "Beck" was born yesterday at 1:37 pm
*Amy started contracting and laboring around noon(that is one fast labor)
*Jake made it just in time
*A nurse had to hold Beck inside so they could get Amy to OR for C-Section because of his breech position.
* He weighed 4 lbs. and 5 oz.
* It took them exactly 1 and a half minutes to get him out once they started procedure (YEAH, that is how fast Amy labors)
* Although he looks very healthy, his lungs never developed past the time all fluid was lost.
*His lungs are functioning at a 22 week status.
* He already has been diagnosed with Severe Lung Disease
*He is fighting strong
*He has developed a hole in his lung.
*The leaked air was getting caught right in front of his heart.
*A team of doctors from Children's came over and did a first ever chest tube insertion right by his breast bone to try and release air from around heart.
*He is back from surgery (took about 2 hours) and is fighting to become "stable" on all machines.
*Because Amy's labor happened so fast, Beckland was much lower than what a typical c-section is(remember a nurse had to hold him in).
*In an effort to get lower the uterine artery was cut and Amy lost too much blood.
*If Amy's number's don't improve soon, a transfusion will be needed.
*Amy's is recovering as well as she can.
In such a deja vu situation, everything is happening that happened with Hailey, we were reminded today from a friend- WE CAN PRAISE JEUSUS FOR HIS PRESENCE AND TRUST HIM. Exodus 14:14 "The Lord will fight for you; you need only to be still."
Tuesday, March 1, 2016
Work up #1
What day is it?!
The last day I woke up on was Sunday, February 28th, and I haven't had a night's sleep yet.
Sunday was a GREAT day. Jake and Mason were here. We went outside in mommy's strollar (a wheelchair) and went on a great walk. Mason just wanted to snuggle me in my hospital bed all day, with breaks to sit up and kiss, hug, and ugha-mugga his baby brother. Jake took us on a date to the cafe for hot chocolate. It was medicine for my soul.
Shortly after they left, I passed what seemed to be another pretty big blood clot. All was well for the next few hours until I was getting ready for bed. I couldn't stop bleeding. SOUND THE ALARMS. One of the signs of great infection and need for delivery. Jake turned right back around after dropping Mason off and headed back down. After some very quick exams, I was getting worked up for delivery. An ultrasound was done, still breech. An IV was started for Magnesium Sulfate (something given for neuro-protection for baby boy), vital signs being taken every 15 minutes for magnesium, blood work, a rescue dose of steroids given for baby's lungs, no food or drink, and continuous monitoring started. Magnesium puts my body straight into a perpetual state of hot flashes and the foggiest of minds. I guess it was a sight to remember. Nurses holding my hands, doctors reassuring me of all that I know(Same doctors that delivered Hailey), people telling me the side effects of all that was being pumped into my body(things I remembered all too quickly from when this happened with Hailey). When all of a sudden I guess I said rather loudly " NO! I CAN'T HAVE A LEAP DAY BABY! THIS BABY NEEDS A BIRTHDAY EVERY YEAR!". hahaha. Like I said " I was in a pretty foggy state of mind.
Contractions started shortly after midnight. Baby started to react negatively to contractions early Monday morning. His heart rate would go down for an extended period of time after a contraction. By Monday noon, bleeding had stopped. Contractions and drop of heart rate didn't. I needed one more shot of steroids for his lungs Monday night at 10:30 for a successful completion of correct dose. They let me start eating and drinking again sometime Monday afternoon. I received the shot and settled in for another sleepless night of monitoring baby's heart rate and contractions. Praise the Lord, I only had two contractions last night and his heart seemed to be recovering well.
After 35 straight hours of being "worked-up" I was finally disconnected from magnesium, and monitoring was changed back to twice a day for twenty minutes. As long as I don't feel any more contractions or start bleeding again. That happened at 8am this morning. So I got to sleep from 10-1 today un-intorrupted. GLORIOUS! I just had a full meal and have grand plans of a shower and more sleep. Hoping for a restful night of sleep tonight.
Our emotions go everywhere after this. It is so easy for us to jump back to last time and think about how after my first work up with Hailey, she made her grand entrance about a week later. Of course, I had about six work ups with her within that week. So, it makes our mind race with questions. Will this baby be here within the next week? Is this a sign my body tells me every time? Do I have enough strength to go through work ups again? How many work ups will there may be this time?
As we think about the pending birth of this boy we are once again brought to our knees before our Lord and Savior Jesus Christ. We echo John the Baptist when he says "Jesus must become greater and I must decrease". With every question that we have, no matter the weight of it. Will this boy meet Mason or Hailey first? or Can I make it to the sink to brush my teeth? We are ever reminded that our purpose on this earth is to bring and participate in His kingdom here. We MUST decrease so that Jesus can become greater and shine through. We must rest, be gentle, have trust and be peaceful so that He can do His work in us and through all of us as a family.
With heavy eyes and hearts,
Amy and Jake
Tuesday, February 23, 2016
28.2-Welcome to the third trimester
Well, still pregnant and actually looking pregnant!! After loosing 7.5 lbs. of water I almost didn't look pregnant anymore. Now six weeks later I look like there is a baby in there after all!!!
I have been having contractions both in my back and in the front, and a lot of aches and pains, sometime longer monitoring because baby boy's heart rate drops. I am just tired. I like to lay most of the day, it feels the best on my body. I feel and find strength in the Lord, but feel physically weak.
BUT I have been finding great comfort in this verse from Isaiah 30:18 (from the message version) "But God's not finished. He's waiting around to be gracious to you. He's gathering strength to show mercy to you. God takes the time to do everything right- EVERYTHING. Those who wait around for him are the lucky ones." I don't know how I feel about the word lucky being in there, but...
My mom is here and has been a HUGE help. She is leaving on Saturday if nothing happens before then, and then will come back when labor happens.
I have been here six weeks and wish for six more! That would take me all the way to 34 weeks!
Specific Prayer Requests:
1. Find relief physically for my aching body( losing muscle from laying so long, my back, normal aches and pains of pregnancy plus added aches and pains from there being no fluid in there with a growing baby).
2. Steady and healthy heart rate for baby boy. (I learned that now he is 28 weeks, Wharton's Jelly has formed around the umbilical cord for protection. This jelly makes it harder for him to squish his cord, resulting in fewer dips).
3. Appropriate growth and maturation for baby boy's lungs, brain and pulmonary system.
4. That we could make it to 34 weeks.
5. Emotional stability for Mason.
6. Baby is still breech. It would be nice for him to turn; however we believe that his position is keeping those contractions from becoming labor inducing ones. So maybe, if I can get picky, that he will turn when it is time to labor.
Love from room 609!
Amy
Tuesday, February 16, 2016
An Ultrasound Update
I got an ultrasound today and the little man is still growing according to his age! He is guessed to weigh around 2 lb. and 9 oz. (They have a formula they use to guess weight according to the femur length, head size and abdomen circumference). More importantly is the 4.7 centimeters of fluid they found. Which means that he is still producing fluid, a good good sign of lung maturation. Again, it is so hard to confuse the weight of him with his overall health. I could still have a big 5 lb. baby boy but because of the lost fluid the development of his lungs could be very poor. There is no way to measure the maturation or health of his lungs, brain, and pulmonary system. We will just have to wait until he is born to see how they are. For now though, we rejoice that he is still safely inside at 27 and 2 weeks and growing like a champ.
My mom is coming back tomorrow. This past weekend I started contracting. The contractions have stopped for the time being, but I still feel pretty weak. It will be so nice to have her here to help!
Specific Prayer Requests:
*Strength for me physically and mentally as I have been here for 5 weeks and hope to go 7 more.
*Baby boy to move to a head down position. He is breech right now. It is much harder for babies to move after the water is gone and they will not aid in trying to flip him with no fluid.
*Proper development and maturation for baby's lungs, brain, and pulmonary system.
* Energy and strength for Jake as he is trying to balance a wife in the hospital two hours away, a son at home, and a full time job.
Love to all,
Amy
My mom is coming back tomorrow. This past weekend I started contracting. The contractions have stopped for the time being, but I still feel pretty weak. It will be so nice to have her here to help!
Specific Prayer Requests:
*Strength for me physically and mentally as I have been here for 5 weeks and hope to go 7 more.
*Baby boy to move to a head down position. He is breech right now. It is much harder for babies to move after the water is gone and they will not aid in trying to flip him with no fluid.
*Proper development and maturation for baby's lungs, brain, and pulmonary system.
* Energy and strength for Jake as he is trying to balance a wife in the hospital two hours away, a son at home, and a full time job.
Love to all,
Amy
Thursday, February 11, 2016
26.4
I never knew that the number 26.4 would haunt me like it does. I always thought that May 20th would be the first time I would have to relive that horribly beautiful day I got to meet Hailey Joy. But, here we sit on February 11, 2016. Today I am 26 weeks 4 days. The exact amount of time we made it before Hailey made her entrance into this world. Today, there is a flood of questions going through my head. Primarily, will my body be able to make it past this point this time around? Is my body able to keep this child in longer? How long can I make it? If he were born today, what would happen? Am I ready to go through this whole process again? I just went on a walk through the halls of the labor unit(something I try to do four times a day) and there was the NICU box that they transfer a preemie baby that is born up here down to the NICU sitting in the hall almost in the exact spot it sat for Hailey. I almost went faint and cried. I know that the Lord will give me strength when it is our turn, but thinking about it is so very daunting. Our Lord holds me, Jake, and this precious boy in His hands. Ready to give rest, peace, joy, and healing to all of us. Today we are resting in the knowledge that God knows when and all that will happen, and has it all ordained for His glory.
A friend shared this lullaby with Jake and I and we want to share it with all of you on this day, a very odd day of remembrance. Obviously dedicated to our sweet sweet Hailey Joy.
https://www.facebook.com/craig.aven.3/videos/vb.622867619/10153464588462620/?type=2&theater
Copy and Paste above link to listen
Perfect Way To Start
By: Craig Aven
I guess I'll have to wait
To hold you in my arms
But God knows how I've held you in my heart
It hurts to think that it may be awhile
Before we see how beautiful you are
And you may not know, but all our kids have songs
And though you have flown way for now
Daddy's still going to write you one
Usually lullaby's don't make mommy's and daddy's cry
But we're both sad and overjoyed to know that Jesus holds you tight
Baby you made us proud
We smile just thinking about
How you left and your first steps will be on holy ground
Be still my heart, heaven's the perfect way to start
I have to say I'm fighting just to sing
Cuz the Angel's get to teach you how to sing
And mommy had your room all ready
With shade of blue and green
But she knows nothing can compare to all you've seen
What a sweet, sweet day its going to be
When you play with your brothers and sisters together on golden streets
Usually lullaby's don't make mommy's and daddy's cry
But we're both sad and overjoyed to know that Jesus holds you tight
Baby you made us proud
We smile just thinking about
How you left and your first steps will be on holy ground
Be still my heart, heaven's the perfect way to start.
A friend shared this lullaby with Jake and I and we want to share it with all of you on this day, a very odd day of remembrance. Obviously dedicated to our sweet sweet Hailey Joy.
https://www.facebook.com/craig.aven.3/videos/vb.622867619/10153464588462620/?type=2&theater
Copy and Paste above link to listen
Perfect Way To Start
By: Craig Aven
I guess I'll have to wait
To hold you in my arms
But God knows how I've held you in my heart
It hurts to think that it may be awhile
Before we see how beautiful you are
And you may not know, but all our kids have songs
And though you have flown way for now
Daddy's still going to write you one
Usually lullaby's don't make mommy's and daddy's cry
But we're both sad and overjoyed to know that Jesus holds you tight
Baby you made us proud
We smile just thinking about
How you left and your first steps will be on holy ground
Be still my heart, heaven's the perfect way to start
I have to say I'm fighting just to sing
Cuz the Angel's get to teach you how to sing
And mommy had your room all ready
With shade of blue and green
But she knows nothing can compare to all you've seen
What a sweet, sweet day its going to be
When you play with your brothers and sisters together on golden streets
Usually lullaby's don't make mommy's and daddy's cry
But we're both sad and overjoyed to know that Jesus holds you tight
Baby you made us proud
We smile just thinking about
How you left and your first steps will be on holy ground
Be still my heart, heaven's the perfect way to start.
Monday, February 8, 2016
Consults
I just had a conversation with my team of doctors recently asking for no more consults. I have had so many social workers, spiritual care guides, etc. come in and try to converse with me about my situation. I know their role is to be supportive and give care in that way however, it is such a blessing to be able to say I don't need them right now. Our team of doctors told us the other day, "Yeah, I don't know many patients that have it together like you guys do; all the people and community that surround you guys are amazing and it's impressive to watch".
Jake and I feel SO loved by our community and we wanted to give a few shout outs to all the people that make up our community. These are the people that make it possible for us to be here, going through this again.
Our families are AMAZING! Jake's family has taken in another child for the time being(Mason). They are so selfless in giving and providing for him while I am here and Jake is either at work, or down here with me. Jess and Marty come and not only hang out with me, but take home dirty laundry to do and bring it back with a smile:) Scott comes, sits with me while on the monitor, plays games, and takes me on walks to "the cut". My mom not only came to be with me for a week, but her and my dad try to take my mind off of monitoring by facetiming me almost EVERY TIME no one is here to sit with me. Jason pays for delivery when Jake and I are sick of hospital food, and the prayer warriors that we have in our siblings, cousins, aunts, uncles, and grandparents is humbling.
Our church, (Whidbey Grace Community). MAN!!! I don't know if I have the words to describe, but I am going to try. Our church's mission is that we want to make disciples that make disciples. Our Pastor, Andy Mahoney and his wife Audra lead the way in this lifestyle. They set out to take our Lord seriously and obey his teachings in such a practical way, it disciples all who have the privilege of living life with them. And let me tell you something, the motto is in full affect. Whidbey Grace is full of disciples that take Jesus seriously and set out to be the hands and feet of Him on this earth. It is such an HONOR to be a part of a community like this, truly. We cannot tell you how much we feel loved, supported, and prayed over by this community. I have received cards after cards, flowers, gift baskets that are stuffed to the brim with books, magazines, verses, lotion, chocolate, handmade blankets for baby, snacks, socks, coloring books, etc., people that check in with me to update prayer requests and send love and comforts of His word, and people that drive all the way down here to sit with me for a few hours, friends that take our son for a few hours, people that drop off dinner for Jake during the week. All of these things are such a support and comfort. We feel so blessed to live in a community that recognizes their covenantal role in helping raise a child of God, even a child that is yet to enter this world. THANK YOU GRACE COMMUNITY!!
All of our friends. Friends that take Mason to his music class, friends that come down here and sit with me, friends that drive all the way down here to bring me a razor, friends that send text messages filled with scripture and love, friends that send packages filled with such goodies(I get to share a lot of the goodies with my wing mates), and friends that are able to pray for us when Jake and I don't have the words to pray.
To all of you who pray for us, THANK YOU. We get a glimpse of the kingdom when we hear and are told how many of you are praying for us. What a great God we serve! He can hold the whole world and yet know and care for the inners of our hearts. Amazing!!
So, Thank you!! to everyone!! it is because of you that I gain some strength and the doctors notice enough to be able to agree and write in my chart, "no consults needed"!!
We Love you all
J&A, for Mason and baby boy too.
ps. prayer request for our hearts this week. Thursday marks 26 weeks and 4 days. The exact day I went into labor with Hailey. It will be an emotional week full of memories.
Jake and I feel SO loved by our community and we wanted to give a few shout outs to all the people that make up our community. These are the people that make it possible for us to be here, going through this again.
Our families are AMAZING! Jake's family has taken in another child for the time being(Mason). They are so selfless in giving and providing for him while I am here and Jake is either at work, or down here with me. Jess and Marty come and not only hang out with me, but take home dirty laundry to do and bring it back with a smile:) Scott comes, sits with me while on the monitor, plays games, and takes me on walks to "the cut". My mom not only came to be with me for a week, but her and my dad try to take my mind off of monitoring by facetiming me almost EVERY TIME no one is here to sit with me. Jason pays for delivery when Jake and I are sick of hospital food, and the prayer warriors that we have in our siblings, cousins, aunts, uncles, and grandparents is humbling.
Our church, (Whidbey Grace Community). MAN!!! I don't know if I have the words to describe, but I am going to try. Our church's mission is that we want to make disciples that make disciples. Our Pastor, Andy Mahoney and his wife Audra lead the way in this lifestyle. They set out to take our Lord seriously and obey his teachings in such a practical way, it disciples all who have the privilege of living life with them. And let me tell you something, the motto is in full affect. Whidbey Grace is full of disciples that take Jesus seriously and set out to be the hands and feet of Him on this earth. It is such an HONOR to be a part of a community like this, truly. We cannot tell you how much we feel loved, supported, and prayed over by this community. I have received cards after cards, flowers, gift baskets that are stuffed to the brim with books, magazines, verses, lotion, chocolate, handmade blankets for baby, snacks, socks, coloring books, etc., people that check in with me to update prayer requests and send love and comforts of His word, and people that drive all the way down here to sit with me for a few hours, friends that take our son for a few hours, people that drop off dinner for Jake during the week. All of these things are such a support and comfort. We feel so blessed to live in a community that recognizes their covenantal role in helping raise a child of God, even a child that is yet to enter this world. THANK YOU GRACE COMMUNITY!!
All of our friends. Friends that take Mason to his music class, friends that come down here and sit with me, friends that drive all the way down here to bring me a razor, friends that send text messages filled with scripture and love, friends that send packages filled with such goodies(I get to share a lot of the goodies with my wing mates), and friends that are able to pray for us when Jake and I don't have the words to pray.
To all of you who pray for us, THANK YOU. We get a glimpse of the kingdom when we hear and are told how many of you are praying for us. What a great God we serve! He can hold the whole world and yet know and care for the inners of our hearts. Amazing!!
So, Thank you!! to everyone!! it is because of you that I gain some strength and the doctors notice enough to be able to agree and write in my chart, "no consults needed"!!
We Love you all
J&A, for Mason and baby boy too.
ps. prayer request for our hearts this week. Thursday marks 26 weeks and 4 days. The exact day I went into labor with Hailey. It will be an emotional week full of memories.
Thursday, February 4, 2016
Hope
There has not been that much activity this week, which is good!! I am at 25 weeks and 4 days today :) I won't get another ultrasound until Feb. 15th to check on the growth of this baby boy. My short term goal is to get as far as I can, but 28 weeks is February 21st which would be pretty cool to get to. My long term goal is 34 weeks(the furthest I can without fluid before they induce me) which is April 3rd.
With all those numbers floating around this week in my head, I have had a lot of time to think. Mostly I have been thinking on the word hope. The definition of hope is; the assurance of something unseen. There is a vast different between human hope and biblical hope. Often times we as humans label our wishful thinking as hope "I hope the Denver Broncos win the Super Bowl." "I hope the sun is out this weekend." These statements are thing we wish/want to happen. However, in 1 Tim. 4:10 it says " we have our hope set on the living God,who is the Savior to all people, especially of those who believe". There is no wishing our wanting in this assurance of Faith. We know that we can have a hope in our God because Jesus Christ came, paid our debt, and offers us free salvation thru accepting Him as our Lord and Savior. It turns our human hope of "I hope so" to a biblical hope of "I know so". It may be confusing to some. I find nothing but comfort in that. Do I desperately want this baby to live? ABSOLUTELY. Do I think Jake is an outstanding father and should get a chance at raising another son? NO DOUBT.
BUT
These are are flesh wants. Do we have an Abba Father in heaven who knows perfectly all that He created? YES. Does our God have a plan and purpose for all he ordains on this earth? YES, AND IT'S ALL FOR HIS GLORY. As much as my flesh wants another child, the hope that is found in our Savior trumps all. Not just because I get a pass into heaven. But because I get the distinct privilege to be used for His plan of glory. To take part of and watch his kingdom come. If our son does not make it will I be sad? DEEP SORROW. But the peace that God gives is immeasurable. I have to believe that it was in God's plan and that he will use it for His glory and purpose, because He is perfect in all of His ways.
After Hailey passed, Jake and I read a book "Holding onto Hope" by Nancy Guthrie. (PHENOMENAL BOOK) there is this part of the book that talks about submitting to God. She says that so often our Christian community focuses so hard on passionately and boldly crying to God for healing and then adding a ps at the end of it says "if it's in your will". she goes on to say, that isn't that so backwards of what we should be praying? Shouldn't we cry out with boldness, passion and persistence, "Lord, mold my heart after you. Teach me your ways. Give me understanding and grace for your will. Make it known." and then, perhaps, we could add a ps at the end of it saying "and if it includes healing, we would be most grateful". The way that Jake and I pray has forever been changed by this. I want to invite you to pray with us this transforming prayer.
The hope that we have found is a hope that is only found in the Lord. It is so much more profound and life changing than the best wish we could ever imagine for ourselves. It's only in this hope that we stand strong and ready to walk.
Anyway, Just glimpse into our thoughts lately....
For Jake too,
Amy
With all those numbers floating around this week in my head, I have had a lot of time to think. Mostly I have been thinking on the word hope. The definition of hope is; the assurance of something unseen. There is a vast different between human hope and biblical hope. Often times we as humans label our wishful thinking as hope "I hope the Denver Broncos win the Super Bowl." "I hope the sun is out this weekend." These statements are thing we wish/want to happen. However, in 1 Tim. 4:10 it says " we have our hope set on the living God,who is the Savior to all people, especially of those who believe". There is no wishing our wanting in this assurance of Faith. We know that we can have a hope in our God because Jesus Christ came, paid our debt, and offers us free salvation thru accepting Him as our Lord and Savior. It turns our human hope of "I hope so" to a biblical hope of "I know so". It may be confusing to some. I find nothing but comfort in that. Do I desperately want this baby to live? ABSOLUTELY. Do I think Jake is an outstanding father and should get a chance at raising another son? NO DOUBT.
BUT
These are are flesh wants. Do we have an Abba Father in heaven who knows perfectly all that He created? YES. Does our God have a plan and purpose for all he ordains on this earth? YES, AND IT'S ALL FOR HIS GLORY. As much as my flesh wants another child, the hope that is found in our Savior trumps all. Not just because I get a pass into heaven. But because I get the distinct privilege to be used for His plan of glory. To take part of and watch his kingdom come. If our son does not make it will I be sad? DEEP SORROW. But the peace that God gives is immeasurable. I have to believe that it was in God's plan and that he will use it for His glory and purpose, because He is perfect in all of His ways.
After Hailey passed, Jake and I read a book "Holding onto Hope" by Nancy Guthrie. (PHENOMENAL BOOK) there is this part of the book that talks about submitting to God. She says that so often our Christian community focuses so hard on passionately and boldly crying to God for healing and then adding a ps at the end of it says "if it's in your will". she goes on to say, that isn't that so backwards of what we should be praying? Shouldn't we cry out with boldness, passion and persistence, "Lord, mold my heart after you. Teach me your ways. Give me understanding and grace for your will. Make it known." and then, perhaps, we could add a ps at the end of it saying "and if it includes healing, we would be most grateful". The way that Jake and I pray has forever been changed by this. I want to invite you to pray with us this transforming prayer.
The hope that we have found is a hope that is only found in the Lord. It is so much more profound and life changing than the best wish we could ever imagine for ourselves. It's only in this hope that we stand strong and ready to walk.
Anyway, Just glimpse into our thoughts lately....
For Jake too,
Amy
Friday, January 29, 2016
Two Days
It has only been TWO DAYS since I last wrote and it feels like ten.
Wednesday night our baby boy's heart rate kept dropping. At 24 weeks pregnant, with no fluid, it is common for babies to squish their umbilical cord. Hailey did this as well. His heart rate would go down in the 70's and stay for 2 minutes until he rolled off of it. Then it would shoot right back up to the 140's. He has continued to do this now for two days. It is exhausting!! Monitoring all the time, rolling from side to side, back and forth, trying to get him off his cord. It is in these moments that I wonder, how can I have the strength to do this again? Surely I can't. Very little sleep, very little to eat, sore muscles and body from moving and then staying in one certain position, doctors coming in wondering if it is time to induce or keep baby in there, talking about risks, only to decide it is better for him to stay in there. Sometimes I think I know too much for my own good about this process.
I finally have a few hours off of the monitor this afternoon. I get to maybe sleep, eat, sit up and MAYBE go on a walk around the wing!!! When I got off the monitor a nurse came in with some mail:) I got wool socks( totally awesome!) and a great book that I have read snip-its of and am looking forward to reading the whole thing. There wasn't a name with it, so if it were you, THANK YOU A MILLION TIMES OVER! It couldn't have shown up at a better time.
There are so many things to be thankful for. So much praise to God for the answered prayers thus far. I have made it 24 weeks, stopped bleeding, my white blood counts are back down, and contractions have stopped thus far. Continued prayers for wisdom for the doctors, this little boy to stop squishing his cord so his heart can beat(and his momma to get some sleep), emotional and physical strength for me, strength for Jake as he is home for most of the week working(he did rush down Wednesday night), and a guarding over Mason as he is confused about what is happening with his mom being gone now for two weeks. We are so thankful for Jake's job and the allowance to leave at any moment to be down here and for family that is taking care of Mason.
In Your justice and Your mercy
Heaven walked the broken road
Here to fight this sinner's battle
Here to make my fall Your own
Turn my eyes to see Your face
As all my fears surrender
Hold my heart within this grace
Where burden turns to wonder
I will fight to follow
I will fight for love
Throw my life forever
To the triumph of the Son
Fighting for His triumph over this world,
Amy
Wednesday night our baby boy's heart rate kept dropping. At 24 weeks pregnant, with no fluid, it is common for babies to squish their umbilical cord. Hailey did this as well. His heart rate would go down in the 70's and stay for 2 minutes until he rolled off of it. Then it would shoot right back up to the 140's. He has continued to do this now for two days. It is exhausting!! Monitoring all the time, rolling from side to side, back and forth, trying to get him off his cord. It is in these moments that I wonder, how can I have the strength to do this again? Surely I can't. Very little sleep, very little to eat, sore muscles and body from moving and then staying in one certain position, doctors coming in wondering if it is time to induce or keep baby in there, talking about risks, only to decide it is better for him to stay in there. Sometimes I think I know too much for my own good about this process.
I finally have a few hours off of the monitor this afternoon. I get to maybe sleep, eat, sit up and MAYBE go on a walk around the wing!!! When I got off the monitor a nurse came in with some mail:) I got wool socks( totally awesome!) and a great book that I have read snip-its of and am looking forward to reading the whole thing. There wasn't a name with it, so if it were you, THANK YOU A MILLION TIMES OVER! It couldn't have shown up at a better time.
There are so many things to be thankful for. So much praise to God for the answered prayers thus far. I have made it 24 weeks, stopped bleeding, my white blood counts are back down, and contractions have stopped thus far. Continued prayers for wisdom for the doctors, this little boy to stop squishing his cord so his heart can beat(and his momma to get some sleep), emotional and physical strength for me, strength for Jake as he is home for most of the week working(he did rush down Wednesday night), and a guarding over Mason as he is confused about what is happening with his mom being gone now for two weeks. We are so thankful for Jake's job and the allowance to leave at any moment to be down here and for family that is taking care of Mason.
In Your justice and Your mercy
Heaven walked the broken road
Here to fight this sinner's battle
Here to make my fall Your own
Turn my eyes to see Your face
As all my fears surrender
Hold my heart within this grace
Where burden turns to wonder
I will fight to follow
I will fight for love
Throw my life forever
To the triumph of the Son
Fighting for His triumph over this world,
Amy
Wednesday, January 27, 2016
Hopefully Boring...
There is this fine line to dance around. With every bit of what seems to be good news, I am hit with the reality that I am still only 24 weeks pregnant. Just barely over half way of a normal full term pregnancy. The fact that babies can sometimes live outside a womb at this age is unimaginable at times. Yet, in my daily walk here I tend to think yeah, 24 weeks, our baby could be born and maybe live.
Jake and I also find ourselves dancing around our emotions too. We feel numb. Waiting for the emergency that is going to happen. We have to save our energy for that moment. We can't even start to hope because of last time or start to grieve because we have to save our strength. Last time, we were engulfed with all the statistics. This time we don't want to revisit those. We still remember all the numbers and frankly, we were on the wrong side of them last time. We aren't laking in confidence in our Lord. We know his ways are set, still proclaim his ordnance of all, and know his goodness and kingdom purposes are being fulfilled. We just feel "here". Taking one day at a time and praying for strength for that one day, knowing whatever will come will be ordained by Him. There are numerous times in a day that I think to myself "ya, I could be here for a few more weeks, no problem." Then the next moment I think "There is no way I am going to make it another few hours".
I had my first ultrasound on Monday. AND we are having a boy!~ exciting times:) He looked fairly good. They estimated his weight at 716 grams (needed to be over 600 grams for certain instruments to be used in the NICU). His overall growth was in the 67%, which compared to to Hailey's 7% we are grateful. My placenta still looks fully attached and in tact, giving him the desperate nutrition that he needs at this time! There is no way to measure maturation of lungs, pulmonary systems, or brain functions, but we are placing those once again in the hands our of Healer. He is currently breeched, so we are praying that before it is time to deliver he will do a 180 and make a natural birth possible. His femur is measuring almost 26 weeks(what can i say, I grow tall Jansen babies)! There were also three pockets of fluid measuring 5.2 cm. AFI.(Compared to Hailey, they were never able to measure the fluid) This is pretty exciting too. It means that baby is still producing fluid and peeing it out so that he can then in return inhale it to mature his lungs! This was probably the most exciting part of the ultrasound. That fluid will then leak out, BUT he is continually making more. The more I leak, the more he makes, the better for his lungs.
So with all that great news we received from the ultrasound, we still feel the need to check ourselves and remind ourselves that he is still only 24 weeks(and three days).
We are loving all the love and prayers! I am so thankful for friends and family at home taking care of Jake and bringing Mason to his music classes, and checking in with both of us! My mom went home yesterday. She had been such a great comfort and is already greatly missed. So if anyone is in Seattle, stop on by. I would love to see a familiar face!
I leave you tonight with a song that I listen to frequently by Kristian Stanfill called "Holding My World"
And this is Your world, you made it
And all of creation is breathing because You sustain it
Jesus, by your powerful word
You spoke out the earth and the heavens
So I will not worry or fret
My God is the God who will never forget
All of His goodness and all of His promises
He's holding my world in His hands
And these are Your days, you give them
All for Your fame and all for Your glorious kingdom
Jesus, You have ordained
All things to dwell in Your purpose
So I will not worry or fret
My God is the God who will never forget
All of His goodness and all of His promises
He's holding my world in His hands
And I am your child, beloved
And all of my days, my future is laid in your promise
Jesus, to the end of the age
I am not alone or forgotten
So I will not worry or fret
My God is the God who will never forget
All of His goodness and all of His promises
He's holding my world
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